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Speech on Voluntary Assisted Dying Bill 2016

24 May 2017

 

I rise with full support for the bill brought to the House by Ms O'Connor and Ms Giddings.  This bill seeks to do these things:  provide a last resort for terminally ill and chronically ill patients who are competent and whose competency can be attested to; to give clarity for medical practitioners through an independent registrar with the responsibility to maintain records and review all assisted deaths.

This bill also aims to give clarity for friends and family of the terminally and chronically ill, for example the case of Elizabeth Godfrey, whose son John was put on trial for assisting her suicide after three attempts.  'Elizabeth was a Christian all her life,' her son, Bill, wrote, 'But at 88 and suffering from an incurable condition, she made the decision to end her suffering'.  As she was allergic to opiates, there was no end to her suffering but death, but with three failed attempts, she needed help, and that help landed her son in deep trouble.

This bill aims to eliminate this end of life trauma for the families of those for whom conventional medicine has no effect, and for whose pain and suffering is insurmountable.  There is no doubt that this bill creates fear and causes extreme feelings in some, especially in some people of faith because the underlying basis for many faiths is the dictum that thou shalt not kill, but of course we do kill.

We kill in war.  We kill in anger.  We kill other animals for food and for recreation, and we kill ourselves.  Medical professionals understand that with a doctrine of double effect, patients die when their pain is being relieved.  Deep sedation at the end of life eases a slow and painful death, and in some instances, hurries death.  Withdrawing life-supporting procedures also may cause death.

When advance care plans detail the kinds of treatment a person nearing end of life does or does not authorise, the end of life experience is often determined by these personal plans.  Voluntary assisted dying, too, must be a personal decision.  It is a compassionate approach to relieve the suffering of a person who is not going to get well, someone facing intolerable pain and anguish.

For someone who has the determination to make the decision for themselves that they want to control what happens to them at their end of life, understanding the moral question and not wanting to belittle that deep conviction, but even a Catholic Governor of California, when signing the End of Life Option Act said:

I do not know what I would do if I were ever dying in prolonged and excruciating pain.  I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill, and I would not deny this right to others.

This kind of premise seems to be the most universal in support of this legislation.  We do not approach it with glee, it is a deeply sobering experience, researching VAD from the narratives of those who are demonstrating the need for this kind of legislation through the suffering of others, their loved ones, and in most cases their partners, parents, siblings or their children. 

If we pass this legislation we will join seven US states and eight countries around the globe in the endeavour to give an individual control over their end of life.  It is worth noting that the Netherlands, with the broadest VAD laws, has a rate of 3.4 per cent of deaths attributed to voluntary assisted dying.  It is a statistic that supports the notion from Go Gentle Australia that in many cases where people sign up to voluntary assisted dying they die naturally.  Even more appropriate and telling is the rate of voluntary assisted dying deaths in Oregon, the first American state to pass the law.  It has been stable at less than 0.5 per cent of the population since the law was introduced in 1997.  The Oregon law resembles this law quite closely and the number of patients dying this way has been static for 20 years.  The slippery slope argument can be refuted by these statistics as the number and the circumstances in Oregon experience no additional consideration for mental health or other non-life-threatening conditions, more counselling, more open discussions around end of life care, better palliative care, more empowered people with more opinions, more options and a stronger sense of control.

This is also true of young people who find themselves in terrible circumstances where they are unexpectedly diagnosed with a life-limiting illness and they are desperate for some control in the final part of their lives.  They want voluntary assisted dying as a safeguard, but when the time comes often do not use it because their deaths are managed and they have submitted to the process.  The lengths those people will now go to in Australia to find a method of suicide can be heartbreaking, desperate and can consume some of the last months of their lives when they could and should be spending that time with their loved ones. 

It was heartbreaking listening to some of the stories of these experiences from the mouths of the dying in Andrew Denton's series Better Off Dead.  It was confronting and it was incredibly sad.  After listening to that series, talking to friends and family I affirmed the opinion I already held that we should all be able to make our own end of life decisions and limit the pain and anguish to ourselves and to our loved ones when our death approaches.  As a last resort, with the support of our community, our medical professionals, our closest friends and family and even in some instances our churches, if pain and suffering are too great we should be able to die on our own terms and not on the terms currently in place in Australia.

This is not a slight against the hard-working medical professionals, not a slight against our loved ones.  This is an acknowledgement that our bodies belong to us and to no-one else and when that body fails irrevocably a compassionate and contemporary society should enable us to have the tools to end our own life on our own terms as we choose.

In a recent episode of Q&A an elderly audience member proclaimed 'bullshit' on a comment from a panel member when she was told she did not have the choice to make end of life decisions for herself.  The panellist indicated that she was not entitled to make these kinds of decisions without the support of her community.  This goes to the heart of this issue.  Who should have the right to determine my end of life choices?  If I have had two medical evaluations and there is an agreement that I am cognisant of the decision I am making and I am not being coerced, then I should be able to have the choice to end my own life if I am suffering enduring and unstoppable pain and anguish.  I then make three requests, including one oral test with the provision for interpreters and sign language. 

This bill establishes the kinds of safeguards that doctors have been arguing for, ensuring there are a number of doctors and specialists in physical and mental health who sign off on the agreement and I am not subject to any criminal charges.  The bill removes the opportunity, as was included in the Canadian legislation, for voluntary assisted dying tourism by ensuring all those who avail themselves of this proposed legislation are Tasmanian residents, are competent and are acting on their own.  This assessment is consistent with the contemporary practice and is already widely administered by a range of professional groups.  The purpose of the test is not to determine whether the decision is right but to determine whether the person is able to apply the relevant information to make a decision that is in line with their preferences and values.

The information must be provided in a format that is accessible to the individual person.  Oregon's death with dignity laws lead the way in the politically conservative country.  We have seen that they can enact voluntary assisted dying laws and have done so with great effect and with very few opponents.  Most religions do not support the voluntary assisted dying.  It is worth noting there are some exceptions such as Christians supporting Choice for Voluntary Euthanasia.

Religion has proffered solutions to difficult questions regarding the human experiences through the ages, before the time of science and knowledge, when explaining the inexplicable through the notion of a 'Supreme Being' was used in benevolence but also used to entrench and control power.  We can now answer those questions through science and many people are turning away from religion as the arbiter of knowledge.  We appreciate the historical connection and the continued charitable work of the church but, for many of us, we do not need someone else to tell us what our morality should be.  We define our own ethics and we endeavour to live by them in a personal way without an ancient tribe but with a tribe of our own making.

We understand some people of faith will rail against voluntary assisted dying legislation.  It takes away power from the perceived supreme deity and puts in the hands of people.  For a person with fundamentalist beliefs this is against God.  However, not all people of religion feel this way and many find a way to include voluntary assisted dying in their sense of religion.

Ten per cent of all deaths in Australia are slow, undignified and painful.  People lose autonomy, they fail to engage with the world, with people attempting to hoard medications to ease their pain by taking their own lives.  This bill gives the option to the dying to either administer oneself and be assisted by a medical practitioner.  There have been many arguments that elderly people fear being a burden but that is in fact the last reason given in Oregon.  It is very rare to hear it and it is actively discouraged as a reason. 

A most trusted voice in this debate has been of nurses, many of whom agree that voluntary assisted dying can be part of the palliative continuum but does not have to be so.  As many nurses know, there is a point of no return when these kinds of decisions cannot be made.  It is really important we engage with as many voices as we can in this debate.  There are some in a disability advocacy space who have voiced serious concern about voluntary assisted dying laws and those living with a disability.

Stella Young was a fierce advocate for disabled people and we must honour her here with a mention.  She spoke of how difficult this debate was for those who suffered daily the pain and distress of living with a disability and of discussions of life becoming unbearable with pain, resulting in the need for voluntary assisted dying laws that gave people the choice.  For her, and for many like her, every day was filled with physical and emotional challenges.  The kind of language used when discussing the degeneration of a disease and for those seeking voluntary assisted dying, the symptoms, the sorrow of loss of ability, spoke to the everyday challenges of disabled people.

The comments that cut through were those that suggested that life was not worth living as abilities were taken by illness.  For the community struggling with some of these issues daily, it cut deep.  If your life is not worth living, how is mine?  This is a challenge.  The language used cuts not to the detail of the law.  If we ensure as this bill does that it is for people with terminal and chronic illnesses, and we consistently confirm this is a personal choice, there is no reason to suggest that voluntary assisted dying should demean the lives of people living with additional needs. 

We must ensure that funding requirements for those with additional needs are met and that the language around disability is measured and respectful.  We must ensure dignity starting with needs based education funding so that students entering school are supported through their education and through their entire life.  The latest disability education snapshot has highlighted there is a long way to go in Tasmania to ensure all students entering school do so with sufficient funding to instigate study plans that allow for abilities and aspiration. 

In this debate we must separate the needs of those with additional needs and the needs of those dying from a terminal illness or suffering chronic illness.  We must not shy away from the circumstance where people who have lived with a disability also want to die with dignity.  The measure here is competency.  A person with a disability may, through this legislation, make their wish to die known.  If they are unable to administer the drug themselves, a doctor could and should assist in that wish.  That person, like the very one who would avail themselves of voluntary assisted dying, must be able to demonstrate competency and that they have not been coerced.

I will finish with a fragment of a letter from Peter McGoldrick.  We all received this letter and many others but this is the one that stayed with me -

Earlier this year I had the privilege of caring for my wife during the final stages of her terminal illness.  Her last few weeks were model 'best practice' palliative care for someone wanting to die at home.  Despite limited mobility, she remained comfortable, conversant and lucid until a few days before she died.  This all sounds wonderful. 

I would now like to share the last couple of days of this 10 year journey.  My wife's liver had failed, she could neither speak nor swallow and breathing was difficult.  She could no longer move from her bed to use a commode and in fact defecated on herself the morning she died.  High doses of opioid painkillers were keeping her calm and apparently comfortable.  But this was hard to gauge as she could only communicate with grunts and groans.  As long as she lay still she did not appear to be in any pain, but any lifting or forced movement was clearly very painful. 

Her last audible spoken words (36 hours before the end) were, 'I just want to die'.  The futility of those last two days will stay with me as long as I live.

I am proud to support this bill.  Australians are demanding the right to die with dignity.  I am a fierce support of voluntary assisted dying to be used in a measured and careful way which will still the fears of those who remain opposed.